‘Dementia revealed – what primary care needs to know’ (the Dementia Primer) is an overview of dementia management. If that document is “What to do?” then this resource pack is “How to do it?” The Dementia Primer has been summarised in this resource pack to provide a quick overview of the key points. The resource pack includes an “Ask the expert’ section in which practical questions are posed to Professor Alistair Burns (National Clinical Director for Dementia, NHS England). These are then supported by descriptions of some clinical case scenarios.

After reading and reflecting on this resource pack GPs should be able to:

describe the key features of dementia and explain which patients particularly merit referral to the specialist service

describe the role of cognitive testing in the diagnosis and management of dementia and produce a plan for their own practice which incorporates appropriate tools

explain how and when anti-dementia treatments in primary care are safe to be introduced, and

create a strategy for themselves and their practice to improve the detection and management of dementia.

]]>#kfdementiahttps://dementiapartnerships.com/kfdementia/
Thu, 26 Feb 2015 17:32:34 +0000https://dementiapartnerships.com/?p=14724Stories from the King's Fund conference 'Leading change in dementia diagnosis and support: actions to inform future national strategy' and social commentary from across the web via #kfdementia. Read more » ]]>

Stories from the King’s Fund conference ‘Leading change in dementia diagnosis and support: actions to inform future national strategy’ and social commentary from across the web via #kfdementia.

This conference brought together professionals in health, social care, housing and the community to reflect on progress, learn from current examples and find new ways of delivering transformational change in dementia diagnosis, care and support.

]]>Dementia assessment and referral 2014-15https://dementiapartnerships.com/resource/dementia-assessment-and-referral-2014-15/
Fri, 05 Sep 2014 09:41:11 +0000https://dementiapartnerships.com/?post_type=resource&p=14366This data collection reports on the number and proportion of patients aged 75 and over admitted as an emergency for more than 72 hours who have been identified as potentially having dementia, who are appropriately assessed and, where appropriate, referred on to specialist services in England. Read more » ]]>

This data collection reports on the number and proportion of patients aged 75 and over admitted as an emergency for more than 72 hours who have been identified as potentially having dementia, who are appropriately assessed and, where appropriate, referred on to specialist services in England.

The Commissioning for Quality and Innovation (CQUIN) framework for 2014/15 contains a national goal on improving dementia care – to promote the identification of patients with dementia and other causes of cognitive impairment alongside their other medical conditions, to prompt appropriate referral and follow up after they leave the hospital and to ensure that hospitals deliver high quality care to patients. This is designated as Find, Assess, Investigate and Refer (FAIR).

Key findings

92 trusts achieved at least 90% in all three measures, an increase of 7 trusts from 85 trusts in Quarter 4 2013-14.

86% of admitted patients were initially assessed for potential dementia in Quarter 1 2014-15, an increase of 2 percentage points from 84% in Quarter 4 2013-14.

Of the patients initially assessed and found as potentially having dementia, 92% were further assessed in Quarter 1 2014-15, an increase of 2 percentage points from 90% in Quarter 4 2013-14.

Of the patients who were further assessed and in which the outcome was either positive or inconclusive, 94% were referred on to specialist services in Quarter 1 2014-15, an increase of 4 percentage points from 90% in Quarter 4 2013-14.

]]>Right to Know campaignhttps://dementiapartnerships.com/campaign/right-to-know-campaign/
Mon, 07 Jul 2014 14:20:04 +0000https://dementiapartnerships.com/?post_type=campaign&p=14283This campaign led by the Alzheimer's Society aims to ensure that everyone with dementia has a right to know about their condition in order to tackle it head on, a right to know about the information and advice available to them, and a right to be fully supported after their diagnosis. Read more » ]]>

This campaign led by the Alzheimer’s Society aims to ensure that everyone with dementia has a right to know about their condition in order to tackle it head on, a right to know about the information and advice available to them, and a right to be fully supported after their diagnosis.

According to the Alzheimer’s Society:

52% of people with dementia in the UK do not receive a formal dementia diagnosis.

The length of time you have to wait to receive a diagnosis varies hugely depending on where you live, from 2 weeks to over 6 months.

Once diagnosed, many people are not given adequate support to come to terms with their diagnosis and manage their condition. A recent Alzheimer’s Society poll found that 90% of people felt unsupported after their diagnosis.

The Alzheimer’s Society is calling for the Government and the NHS to do more to support people with dementia as they receive their diagnosis and immediately afterwards.

The Right to Know campaign aims to ensure that:

More people receive a diagnosis so that they can plan for the future whilst still able to.

No one to waits longer than 12 weeks from seeing their GP to getting their diagnosis.

Everyone diagnosed with dementia should have access to a Dementia Adviser (or equivalent) to help them come to terms with their new condition. They will be able to answer simple questions about dementia and signpost to services available locally.

In the video below, published by the Alzheimer’s Society, Nick and June talk about their experience of getting a dementia diagnosis, and finding support afterwards.

]]>Memory services for an ethnically diverse population in Tower Hamletshttps://dementiapartnerships.com/project/memory-services-for-an-ethnically-diverse-population-in-tower-hamlets/
Mon, 06 Jan 2014 16:07:07 +0000https://dementiapartnerships.com/?post_type=project&p=13740The introduction of an integrated, patient centred dementia service has had a positive effect on diagnosis rates and cost effectiveness in the London Borough of Tower Hamlets. Read more » ]]>

The introduction of an integrated, patient centred dementia service has had a positive effect on diagnosis rates and cost effectiveness in the London Borough of Tower Hamlets.

Within a year referrals to the memory service doubled, with a particular proportionate increase in the Black and Minority Ethnic community, and in 2012 the diagnosis rate increased by 9.6% to 50%. A reduction of 11,000 bed days previously used for assessments has enabled a reduction of 23 inpatient beds.

Background

Between 2009/10 and 2010/11, national improvement statistics showed that Tower Hamlets Primary Care Trust (now Tower Hamlets CCG) had been unsuccessful in improving their dementia diagnosis rates. The Trust was second to last in PCT dementia performance improvement in London, with low recording on the primary care register. Dementia services were part of a general Community Mental Health Service for Older Adults. Memory services were not commissioned.

Service users and carers said that their experience was fragmented. They perceived that getting a referral for specialised assessment ‘was a battle.’ Once the assessment was complete they would often have to be referred separately to the Council for a social care assessment and on again for an assessment by a geriatrician.

Care staff reported having little understanding of dementia as a condition let alone how to work in a person-centred way with someone who had dementia.

A further challenge for the dementia partnership was engaging local communities. Typically the ethnically diverse resident population tended not to seek help, making late presentation a big problem.

Opportunities and actions

Tower Hamlets used the opportunities the National Dementia Strategy published in 2009 provided, as a way of developing what good services should look like.

The Trust set up a leadership coalition with carer, public health, commissioner and provider representatives, which became the Tower Hamlets Partnership. The partnership included users and carers, psychiatry, social care, GP’s, Alzheimer Society, Age Concern and commissioners.

From the outset the principles that were agreed were based on a strong conviction that through joint commissioning the partnership could harness opportunities for integrated health and social care pathways. The views of all the partners were captured in Tower Hamlet’s Joint Strategic Needs Assessment document.

The strategy developed a structured three year awareness raising plan based on the best available evidence. It specifically looked to address:

The stigma and consequences of poor access to services that people with dementia may experience

The benefits of timely diagnosis and care

Awareness of dementia in the Bangladeshi and Somali communities.

This process enabled Tower Hamlets to design a clear pathway and to secure the funding needed for commissioning new services.

The new services

Tower Hamlets commissioned a whole range of new services, with a coherent community pathway that was entirely integrated across health and social care. This included:

As part of the community awareness-raising activities, a member from the Alzheimer Society trained 120 local Imams to understand dementia and its issues. This resulted in the Imams delivering special sessions devoted to teaching the local community about dementia in their mosques.

When a service user attends the diagnostic memory clinic, the assessment is holistic. They see a psychiatrist / psychologist as routine and may see a geriatrician, social worker or nurse if appropriate to their needs.

They will be offered post-diagnostic counselling and pastoral support by the Alzheimer’s Society Dementia Adviser Service, which is co-located with the Memory Clinic.

Any person with a diagnosis of dementia in the borough will now be offered the telephone number of a health and social worker who works in the dementia pathway. This could be a Dementia Adviser, if the person has mild problems associated with their dementia, or a doctor or nurse from the Community Dementia Team, if they have more complex problems.

The Community Dementia Team provides on-going support for anyone with moderate to severe needs and also provides outreach into care homes and into primary care. The team also provides various therapeutic groups.

Tower Hamlets also commissioned a range of social care services. In addition to the existing specialist day centre, there are also very well attended dementia cafés provided by the Alzheimer’s Society. One café provides specific support for the Bengali community and one is for all comers.

Outcomes

Between 2010/11 and 2011/12 the impact of the new pathway has been profound.

Referrals to the memory clinic have almost doubled in the space of a year. Inpatient bed days that were occupied for dementia assessment have reduced by over 11,000 throughout the Mental Health Trust.

With the new services proactively supporting people closer to home, Tower Hamlets worked closely with their neighbouring areas of Newham and City & Hackney to reconfigure inpatient dementia beds as all three areas are served by the same partnership trust. These have been reduced from 44 to 21, with a resulting release £1million of funds. As of October 2013, there are only 8 patients on the ward.

Prior to commissioning the new services, only 10% of referrals were from the Bangladeshi community even though the local population is 33% Bangladeshi. Through the support of a Bangladeshi outreach worker, Bangladeshi referrals of people from the Bangladeshi community are now thought to represent approximately 20% of the total.

People assessed as having dementia in acute care has increased. The people with a confirmed diagnosis of dementia recorded on the primary care dementia register increased from 40.3% in 2011 to 50.0% in 2012, a 9.6% increase, making Tower Hamlets the most improved organisation in England over this period.

The partnership is now building dementia and mental health expertise more generally into its new integrated care system.

Feedback

“Very thorough discussion regarding the assessment process and the diagnosis result was relayed in the nicest fashion.”

Service user, Memory Service National Accreditation Process

“Good continuity and letters. Excellent nurses. I have been called by their doctors about patients and also to tell me changes in care. They seem very good. They do home visits – doctors seem motivated and caring.”

GP, Memory Service National Accreditation Process

“It was good to get out of the house. Thank you very much for putting a smile on our faces.”

Service user

“It brought Jane to life: it was a lifesaver.”

Service user

]]>Worcestershire Early Intervention Dementia Servicehttps://dementiapartnerships.com/project/worcestershire-early-intervention-dementia-service/
Sun, 29 Dec 2013 12:59:37 +0000https://dementiapartnerships.com/?post_type=project&p=13487Worcestershire Early Intervention Dementia Service (EIDS) have developed a clear referral pathway, which includes pre-assessment counselling, consent, family engagement, assessment by a competent specialist and sensitive disclosure, leading to better access to treatment and support. Read more » ]]>

Worcestershire Early Intervention Dementia Service (EIDS) have developed a clear referral pathway, which includes pre-assessment counselling, consent, family engagement, assessment by a competent specialist and sensitive disclosure, leading to better access to treatment and support.

The service offered

The patient will be offered an appointment at home within approximately six weeks of the referral. This is carried out by a nurse who remains with the patient throughout their involvement with the service and is an opportunity to offer pre-assessment counselling and establish informed consent to proceed with an assessment. The next two appointments are held in clinic with the doctor and nurse to carry out a comprehensive assessment and formalise a diagnosis. We have access to further neuropsychological (psychologist) and functional (occupational therapist) assessment if required.

Following diagnosis, the patient and their family are offered a period of post diagnostic support (for approximately three months) which may include initiation and monitoring of cholinesterase inhibitors if indicated, referrals to external support agencies including Dementia Advisors and Admiral Nurses, carer Support, psychological support for patients and/or family members, confidence building, memory strategies, assistive technology and more. We would aim to discharge the patient with a dementia advisor in place. We are also able to refer into the CMHT if continued specialist support is required.

Before the service’s inception, it was estimated that only around 30% of those having or developing dementia were receiving any sort of treatment or intervention. At the onset of EIDS, take-up of the service was around double that expected. This has resulted in a greatly increased percentage of early stage diagnosis. Even in the first year, 86% of patients chose to continue with the service following referral.

Service benefits

The University of Worcester produced a very in-depth Evaluation Report detailing the results of the EIDS approach from July 2010 to June 2011, involving 683 referrals. The main successes of the programme included:

a clear route towards dealing with the problem on all fronts instead of an inconsistent approach,

the availability of specialists in a timely manner, particularly when dementia was diagnosed at an early stage while the patient was able to contribute to the process,

a pathway capable of dealing with younger-age dementia (under 65),

information resulting from a unified series of tests, which could be used to make life-style changes for the patient, their families and their carers,

The financial impact of such a development is difficult to quantify because there are so many variables involved, but improving the service in a more effective and focused way, as EIDS has done, will inevitably give better value for money. Cost per patient, including 6- to 12- month follow-up, has been reduced to £900.

The clarity of the pathway not only makes the patient experience more effective and acceptable, but all the professionals along the way – GPs, specialists, carers and support team – are content that they can deliver a better service, due to their roles being clearly defined. Rolling out the Worcestershire EIDS pathway across the country could have an invaluable effect in boosting the morale of patients and staff alike.

]]>Improving the identification of people with dementia in primary carehttps://dementiapartnerships.com/resource/improving-the-identification-of-people-with-dementia-in-primary-care/
Mon, 23 Dec 2013 12:33:48 +0000https://dementiapartnerships.com/?post_type=resource&p=13735This journal article presents findings of work to develop guidance on the coding of dementia and reports on the impact of applying this to ‘clean up’ dementia coding and records at a practice level in London. Read more » ]]>

This journal article presents findings of work to develop guidance on the coding of dementia and reports on the impact of applying this to ‘clean up’ dementia coding and records at a practice level in London.

The article demonstrates the potential of a simple primary care coding exercise, requiring no specific training, to increase the dementia identification rate. An improvement of 8.8% between 2011 and 2012 is equivalent to that of the fourth most improved primary care trust in the UK.

In absolute terms, if this effects were mirrored across the UK primary care, the number of cases with dementia identified would rise by over 70 000 from 364 329 to 434 488 raising the recognition rate from 46% to 54.8%.

Implementing this exercise appears to be a simple and effective way to improve recognition rates in primary care.

]]>Memory Firsthttps://dementiapartnerships.com/project/memory-first/
Fri, 20 Dec 2013 14:24:57 +0000https://dementiapartnerships.com/?post_type=project&p=13478Memory First is an integrated dementia service run by a consortium of 162 GPs across 41 practices in Staffordshire. Its pioneering joined-up approach to care has cut diagnosis times from 3 years to 4 weeks and led to major improvements in patient experience. Read more » ]]>

Memory First is an integrated dementia service run by a consortium of 162 GPs across 41 practices in Staffordshire. Its pioneering joined-up approach to care has cut diagnosis times from 3 years to 4 weeks and led to major improvements in patient experience.

The video below shows how Memory First is working in Gnosall Surgery in Staffordshire.

Service background

The Gnosall Clinic provides one half day clinic per month, with the availability of support and telephone expertise from a specialist between times.

A consultation room is available within the Practice. This is equipped with computer access and facilities for interview and routine physical examination if needed.

The clinic is organised by the Practice-based Eldercare Facilitator (ECF) who devotes two sessions per week to this work. This role was originally provided by a Health Visitor.

Specialist expertise is provided by a consultant psychiatrist with experience of work with older people and with particular interest in dementia.

People appropriate to the clinic are identified by clinicians within the Practice. This may be as a consequence of observations during routine clinical contact or attendance at screening or monitoring clinics for ‘at risk’ groups. The Clock Drawing Test and BASDEC schedule are used as initial screens for problems of cognition and mood respectively.

The clinician identifying problems, and seeking advice and help, is responsible for preparing case material for presentation to the consultant in association with the ECF.

The materials prepared for this consultation provide a basis of core information from which future actions, investigatory and therapeutic, can follow. It is important, therefore, that this is thorough but concise. The materials will be shared with the patient and, in most cases, with main carers.

The essential ‘inclusion criteria’ are interpreted flexibly: age 65 years or older, or multiple pathology, circumstances and demeanour such as are usually associated with later life. People with memory problems at any age are referred and accepted.

]]>Pathways to dementia diagnosis: A review of services in the South West of Englandhttps://dementiapartnerships.com/resource/pathways-to-dementia-diagnosis-a-review-of-services-in-the-south-west/
Sat, 30 Nov 2013 15:47:14 +0000https://dementiapartnerships.com/?post_type=resource&p=13838This report authored by Dr Edana Minghella provides the findings of her independent review of Pathways to Dementia Diagnosis in the South West of England. Read more » ]]>

This report authored by Dr Edana Minghella provides the findings of her independent review of pathways to dementia diagnosis in the South West of England.

Many commissioning organisations in the South West have responded to the challenge of improving the diagnosis of people with dementia by exploring new pathways to diagnosis and a variety of models are now emerging.

This report seeks to make an early comparison of these pathways, and what happens after diagnosis, to identify what makes a good pathway. The findings will be useful to both commissioners and service providers in developing existing models to suit the needs of their local populations whilst maintaining or improving standards.

This review also raises the profile of a cohort of people emerging from diagnostic services with not dementia but the even less certain diagnosis of Mild Cognitive Impairment. Whilst this suggests that the public and GPs are getting the message about the value of earlier diagnosis, commissioners now also need to answer questions about how best to follow these people up in the future, and what support or prevention strategies to offer them in the meantime.

]]>Putting dementia on the maphttps://dementiapartnerships.com/resource/putting-dementia-on-the-map/
Fri, 29 Nov 2013 17:02:20 +0000https://dementiapartnerships.com/?post_type=resource&p=13471Putting dementia on the map published by the Department of Health draws on data and information about dementia health and care, dementia friendly communities and research. Read more » ]]>

Putting dementia on the map published by the Department of Health draws on data and information about dementia health and care, dementia friendly communities and research.

It highlights where improvements are being made and where we can see progress, but it also shows where we need to improve, including where we need better data.

In the community
This map highlights how long you might expect to wait for diagnosis or treatment at a memory clinic. It also shows how effective your local clinic is at making a diagnosis and how this compares with the overall level of dementia in your community.

At hospital
This map shows how alert your local hospital is to dementia, what the prognosis is for those who are admitted and how long are they likely to stay.

The future of care
This map shows how many people are expected to be living with dementia in your area in the future, based on local prevelance rates. It also shows which towns and counties have signed up to become Dementia Friendly Communities and how many research studies into dementia treatment and care are being run by memory clinics.

Much of the data shown on the map is provided voluntarily by health and care providers and local communities. This means that for some maps, there isn’t enough information about particular areas to give a representative view. If you are a trust, a CCG or another organisation, and you believe the data shown for your area is inaccurate, please email scp-dementia@dh.gsi.gov.uk.